I have been lucky in one respect: I've been able to be open about my life and my HIV/AIDS status and to know people who treat me no differently, and for that I am grateful. On the other hand, I have dealt with my share of stigma, due in part to a lack of education, religious and moral beliefs or, possibly, just plain ignorance on the part of those who direct their words, actions and Bible scripture quotes at me, even to the point of telling me: "I wish you were dead," or "You deserve to burn in hell," or "You should be ashamed to even show your face in public for living your life as you do and for being so public with your status, as if it's something to be proud of."
Even today, after all these years, I find that HIV/AIDS is still an uncomfortable subject for so many; therefore, it just gets passed off as, "Oh well, so and so have AIDS, they are just dirty people who did something to deserve it, and I believe it's wrong, so I'll just condemn them for it and know that no child, friend or family member of mine would ever do anything to become one of 'those' people and, therefore, it's the problem of someone else." I even had a mother tell me one time that I should be ashamed of having become infected because I was better than that, that her sons would never do anything like I did because she had taught them better and that it would not do me any good to pray to God for my prayers would never be heard.
With conversations like these, HIV remains a subject that, if discussed, is many times a negative one. It usually ends up being one of those situations where no one says anything for fear of saying the wrong thing, or it might end up being an all-out shouting match because of opposing religious, moral or other views. It is seldom a learning or educational conversation. Or, if it is a conversation, its one of those "preaching to the choir" types, where those discussing it are open and accepting of the idea of talking about it to begin with. Among the general population, I often find the shame attached to HIV is felt more by those who associate themselves with persons like me in various settings within our communities. For others to feel better about themselves, they direct that shame and feeling of insecurity at the infected and/or their community of support, and it becomes a "moral" cycle, once again.
I, like so many others in the South, was raised in some form or another of religion, and I by no means am trying to disrespect the beliefs of anyone. But, I have found through my own experience that religious groups/churches/ministers/Christians, have failed to offer compassion, care and inclusion to those of us living with HIV/AIDS. Rather, for the most part, they have cast aside the "Christ-like" examples because being a person living with HIV/AIDS causes such an uncomfortable atmosphere and a guilty-by-association mentality for most people.
A lack of kindness, compassion or even an effort to understand those like myself, who are morally unaccepted because of our lives and a disease that we have, is in many cases the reaction. There is much isolation for those of us living with HIV/AIDS, in that we are made to feel that we do not belong and that God, or whatever higher power you believe in, does not love or accept us. Just within the past month, I did an informal survey of sort by contacting various church leaders to get a sense of what, if anything, their respective churches were doing to address HIV/AIDS. Of all the different churches I contacted, only two responded and, of those two, one turned it into a moral/sin conversation, noting that persons were infected, for the most part, due to their lifestyles, as it were.
The old saying is that a journey begins with the first step. My journey began with that first step one October day, so many years ago, when I found out I was infected. Today, it's still one step at a time. Sometimes it is one step forward and three steps back, as it seems as if trying to educate others is like banging my head against a wall.
It is said that there have been survivors of every epidemic, and so far, I'm a survivor. There are constant stories about possible cures to end the HIV/AIDS epidemic. I hope those who consider themselves unaffected by this disease, and who may look down on those of us who know we are affected, understand that we all come from the same source of being and that to be a caring person takes more than a fleeting thought about others. The change begins when we are willing to look beyond our own lives and allow ourselves the opportunity to open our hearts and minds, to really understand that stigma comes in all forms. In the end, will we have loved ourselves and others, even "those" people? And can we honestly say we were not a stumbling block? It is easy to place our beliefs, whether right or wrong, on others, rather than taking the time to consider how it might affect them.
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Read Harold's blog, Positive and Beyond: A Rural Perspective.